An eight-year-old girl from Kinvara, Co Galway, has completed her climb of Croagh Patrick to raise awareness and help fund research into the muscle wasting disease Duchenne Muscular Dystrophy.
Marilou Wheelock was moved by the story of 16-year-old twin brothers, George and Isaac Naughton from Roscommon.
They were diagnosed with the condition when they were four years old. Their older brother Archie was also living with Duchenne and died in 2022 when he was 16.
The boys' parents, Padraic and Paula Naughton, are both mental health nurses. They set up the Join Our Boys Trust to provide their sons with specialised care and life-changing gene therapy treatments.
"To be told that one of your children has a fatal disease that currently has no treatment or cure is absolutely devastating," said Mr Naughton.
"To be told that all three of your children have that same fatal disease is beyond comprehension."
Ms Naughton said they don't gain personally from the fundraising.
"The trustees work on a voluntary basis and include a doctor and an accountant. What we've tried to do is turn what, for us, is a personal tragedy into a community initiative, and people have responded in the most amazing way," she said.
"To see an eight-year-old girl like Marilou do this for the twins is so life affirming. We need champions like her in every county."
Marilou had been hiking in the Burren as part of her training to scale Croagh Patrick and was thrilled to achieve her goal this afternoon.
"I really wanted to help George and Isaac get their treatment. I saw my older brother and sister do fundraisers and I wanted to do the same," she said.
"My campaign is called Sweet Sixteen and I really want the boys to have the best life they can."
In late 2024, George and Isaac were invited to a pioneering clinical trial in the US. The trial specifically aims to test a treatment that can help protect their hearts and slow down cardiac damage.
"A lot of research is being done internationally but it is very expensive because it is complicated and it’s very slow," said Ms Naughton.
"That’s why every initiative to raise awareness, like the Croagh Patrick climb today, is so much welcomed."
